Saw my GP today which was a complete waste of time as I seemed to know much more about my various ailments & just referred me back to consultants, when what I need is someone to look at my overall health as a whole. Have PMR/Myositis, need a new knee with a DVT in the leg with complications, due for a colonoscopy after a stool test, have a balance problems & lung infection.
I'm lowering my prednisolone (on 11mg at the moment) & am beginning to feel quite exhausted & wobbly a lot of the time. The neurologist I'm seeing suggested lowering 1mg a month so that when I see him again in April I will be on 10mg. It is possible I'm feeling rough because my adrenals are not kicking in (I've been on Pred for 3 yrs 8months) but it could well be something else.
I asked the GP about tests for adrenal insufficiency & she didn't seem to know except mentioning Addisons disease. How can I check that reducing the prednisolone is causing an adrenal problem & what can I do about that.
Thank you.
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Purpleprimate
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The dose you are currently at is high enough that your adrenal function in terms of corticosteroid production is totally suppressed. Any test will only show you are not producing cortisol so there is little point in doing any.
Once you are at a lower dose of pred, they can do a basal cortisol, cortisol measured on a blood sample taken between 9am and 1pm. If that shows an equivocal result they can then do a synacthen test to see if there is any residual function producing cortisol in response to an injection of artificial ACTH. But most endocrinologists won't sanction a synacthen test until your pred dose is down to at least 5mg, preferably lower - purely because above that, it is very unlikely there is going to be a positive result and it is meaningless - it isn't that you have Addisons, it is because you are a high enough dose of pred to suppress natural adrenal function.
There isn't anything you can do about it except stick at tapering the pred dose slowly. The only thing that will encourage the adrenals to come out of hibernation is a low level of pred at midnight or thereabouts as that is what triggers the HPA axis, the hypothalamus, pituitary, adrenal set-up, to signal to the adrenals to produce cortisol. There is no diet, no supplements, nothing that will change the response one way or the other.
It is a difficult time - until the adrenal function starts to wake up, you are likely to feel fatigued and rough. It doesn't "kick in" which suggests something like a light switch being on or off, it returns slowly and in fits and starts so one day you may feel not too bad, the next you feel rubbish again. Even after getting off pred altogether it is said to take up to a year for the system to return to anything like normal.
Like everything else with PMR, patience is the name of the game.
This is such a clearly expressed helpful response PMRpro. Thank you from someone suffering the rubbish days followed by those not too bad ones. Patience and pacing, so tedious but necessary at this stage of the game.
My period of insufficiency went on for months with the worst being from 7/8mg to 5mg. Then the lights started to come on with brighter periods but still I was still having to limit what I did. By 1.5mg I was fine unless I did anything extra to my daily life. My Synacthen test at 4mg wasn’t very good but by 1.5mg it reflected my improvement. I got there in the end with 0.5mg introduced over 6-14 weeks as the lower I got the slower I got. It sure can be a protracted and scary time. I say scary because one can feel like one will never be the same again. It is especially frustrating because one is led to believe that low dose = happy days but for some it isn’t quite like that. Hang in there!
Ah thanks Snazzy, your experience is helpful too. I do take things quite slowly these days, so different to the person I was pre GCA. Had a lovely weekend with the family over Easter but after a long journey, walk to restaurant that evening, then the farm park visit on day 2, I found myself slumped on a bench watching dear granddaughter from a distance. My legs could go no further and I had to rest. Day 3 and return home on day 4 were fine. Taking it easy now until Friday when we fly off on holiday for a fortnight. I’m not attempting to reduce from 3mg over my holiday.
Ah yes, sadly a lovely time needs cortisol. I was on 2mg and my husband and I were walking around a stately home grounds on a calm, balmy day soon after a good breakfast. Suddenly my legs wouldn’t work and I got the weak wobblies. I had to take a couple of mg and my husband had to run back to reception to get a mobility scooter and of course we were on the outer reaches of the estate. It took ages because a member of staff had to come out to perform the obligatory induction talk before I could use it and then walk back. I was mortified.
I had a mobility scooter at Chester zoo the dreaded summer of ‘22 just three months after diagnosis so I feel your mortification. I knew I’d never manage walking around but but only managed a couple of hours on the scooter. My god those early days were horrific. We had an early family meal and my sister was shocked that I couldn’t walk the 100 yards or so to the hotel. I have to think back to how far I’ve come with this thing. Thank you for your message. I’ve found the support of this group and you experts invaluable.
Midnight isn't required - the halflife of pred is 2.1-3.5 hours, It takes 5 halflives for all prednisolone to be entirely out of the body, 12.5 to 8 hours at most. Don't leave it until lunchtime but taking it at midnight might disturb your sleep.
Hello. PMRPro. I am very interested in what you said about taking a low dose of pred at midnight to encourage HPA axis. How much pred would you suggest? I am on slow reduction at 5.5 right now. Thank you.
It isn’t the dose of Pred that helps, more the timing. What PMRpro means is that it is the presence of low levels of Pred at midnight that stimulates the adrenal axis to work. This is relevant once well under 10mg so when you take your 5.5mg a morning dose will mean that by midnight your blood should be reasonably clear of Pred. This should trigger the brain to pick that up at midnight and hopefully decide that the adrenals need to swing into action and produce cortisol for the morning.
Thank you, Snazzy. Sorry to be thick! Soo is it better to have no pred at midmight i e continue at 5.5 in the morning? Or does having a small amount of Pred at midnight help the adrenals to produce cortisol in the morning?Sorry .....
It means take no Pred in the evening in order for your morning Pred to have run out by midnight. That way your brain should have extra chance of seeing a low level to make it swing into action. It is no Pred in the system at midnight that will trigger it. If you keep your blood levels of Pred up over a 24 hour period like with split doses or take the Pred after lunch, the brain might think it’s all ok and not bother. Keep taking your dose in the morning.
That isn't what I said at all. As Snazzy has explained, the level of pred in the blood must be low at midnight to trigger the body to produce early morning cortisol - and that means it isn't helpful to take pred in the late evening, before midnight, as then the level would be higher, Taking your pred any time after midnight is OK, but not before.
Thank you for explaining, PMRPRO.I was obviously not the only one who misunderstood your post. It makes perfect sense that adrenals need low/no pred at midnight to be encouraged to work.
To be honest, my personal experience
right now leaves me vulnerable and weary beyond anything.
Brilliant article - thanks - although you think you know it all from experience there is sometimes a little line that helps with something that has puzzled one - notice the picture of the adrenal gland at top of kidney - something I learned the other day - one is always smaller than the other - and that they are not connected to the kidneys at all but are a separate entity - i.e. separate blood supply that is more connected to the heart !
Hi there a test for adrenal insufficiency is called a short senacten test or SST for short - it requires you to be on the day ward and be injected with ACTH a pituitary hormone to see the adrenal response - this would happen 3 times and blood is taken to see the response - a good response you feel amazing - a bad response you feel dreadful as the adrenals are put under pressure- you should not drive home - I have also just had a blood test taken to see how much cortisol is in the bloodstream and mine was 28 - 20 is the amount the body needs to produce to keep you ticking over - your steroid medication will suppress the adrenals from producing cortisol naturally so blood levels are often low - adrenal insufficiency can come from many different pathways though even low vitamin C or taking oestrogen or thyroid hormone You have a lung infection - well this will bring you down and you certainly must not reduce your steroids in my opinion - when your adrenal response is needed to be strong to fight an infection - in fact you should be following the 3 day sick rules when you get ill ! Hope this helps ?
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